The Lived Experience of Caregiving and Perception of Service Provision among Family-Caregivers of People with Late-Stage Parkinson’s: A Qualitative Study

Background. The complex nature of late-stage Parkinson’s requires multiagency support and leads to an increased burden on family members who assume a multiplicity of responsibilities. The aim of this study is to further understand the lived experiences of family-caregivers and their perception of, and satisfaction with, service provision. Methods. This qualitative substudy was a part of the European multicentre Care of Late-Stage Parkinsonism (CLaSP) project. Purposive sampling resulted in a sample of eleven family-caregivers of people with late-stage Parkinson’s, who were interviewed using semistructured open-ended questions. Thematic analysis followed. Findings. Three overarching themes were developed from the data: ensuring continuous support is vital to providing care at home, perceiving unmet service provision needs, and advocating and co-ordinating all aspects of care take their toll. These themes include not only experience of services that caregivers find supportive in order to deliver care but also of disjointed care between multiple agencies, a perceived lack of Parkinson’s expertise, and there was a lack of anticipatory future planning. The constancy and scope of the family-caregiver role is described, including the need to project manage multiple aspects of care with multiple agencies, to be an advocate, and to assume new roles such as managing finances. Multiple losses were reported, which in part was mitigated by gaining expertise through information and support from professionals and organised and informal support. Conclusion. The intricacies and consequences of the family-caregivers’ role and their experience of service provision indicate the need to acknowledge and consider their role and needs, fully involve them in consultations and provide information and joined-up support to improve their well-being, and ensure their continuous significant contribution to the ongoing care of the person with Parkinson’s

The effectiveness of aromatherapy and reflexology in neurodegenerative disorders: a systematic review and meta-analysis

Many neurodegenerative conditions are chronic disorders and result in a range of debilitating symptoms, with many people turning to complementary therapies. A systematic review and meta-analysis were conducted to investigate the evidence on effectiveness of aromatherapy and reflexology on all neurodegenerative conditions. We identified nine eligible studies (total sample n = 504 participants) all of which were on multiple sclerosis only. A meta-analysis was conducted including data from six studies, which demonstrated no significant benefit of aromatherapy/reflexology; however, the sample sizes were small and of low quality. This systematic review confirmed that it is not possible to draw conclusions regarding the effectiveness of reflexology and aromatherapy in multiple sclerosis. Larger high-quality studies are required to test these widely used therapies

Intervention components in the self-management of Parkinson’s: A mixed-methods synthesis of qualitative and quantitative evidence

INTRODUCTION: Self-management interventions consist of multiple components to support people in the management of medical, emotional, and behavioural aspects of their condition, and aim to improve quality of life, function, and other outcomes. A systematic review of self-management interventions in Parkinson’s showed no conclusive evidence for effectiveness of specific self-management approaches in Parkinson’s to date but identified several potentially useful components. AIM: To identify the key required components for self-management in people with Parkinson’s by synthesising evidence from a body of primary qualitative evidence and systematic reviews, and to explore which of these key components should be incorporated into trials of self-management in Parkinson’s. METHOD: A mixed-methods synthesis was conducted. We combined data from two primary qualitative studies and a systematic review of qualitative studies that focused on self-management in Parkinson’s to identify key intervention components. These were then mapped onto the results of a systematic review of Randomised Controlled Trials (RCTs) using matrices. First, data were extracted from the qualitative studies with people with Parkinson’s and healthcare professionals on the key self-management components in this population. Second, a matrix table was created to map the identified Parkinson’s specific self-management components against potential effectiveness from published RCTs of self-management interventions. RESULTS: Synthesis of qualitative data identified 15 potential self-management components. These 15 components included components needed to start self-managing (e.g., information, skill acquirement) and components needed to maintain self-managing (e.g., self-motoring, increasing motivation). From 18 RCTs, interventions varied in how many components were included (range 1–10). Trials reporting significant beneficial effects of their intervention included a higher number of components (4 or more self-management components) than trials without significant findings (1–3 self-management components). CONCLUSION: Fifteen key self-management components were identified that should be incorporated into interventions or programs of self-management in Parkinson’s. No current trial has incorporated all aspects, but a higher number of these key components appears to make trials of self-management interventions more likely to be successful

Remote Consultations for People with Parkinson’s and Cognitive Impairment – A Qualitative Study with Patients, Caregivers and Healthcare Professionals

Background: The Covid-19 pandemic led to many consultations being conducted remotely. Cognitive impairment is recognised as a potential barrier to remote healthcare interactions and is common and heterogeneous in Parkinson’s. Research studies have shown remote consultations in Parkinson’s to be feasible, but little is known about real life experience, especially for those with cognitive impairment. We explored the experiences and perceptions of remote consultations for people with Parkinson’s and cognitive impairment. Objective: To explore the experiences of remote consultations for People with Parkinson’s and Cognitive Impairments, from the perspective of service users and professionals, and investigate considerations for future service delivery. Method: Semi-structured interviews were conducted remotely with 11 people with Parkinson’s and cognitive impairment, 10 family caregivers and 24 Healthcare Professionals in 2020-2021. Purposive sampling was used. Interviews were audio-recorded, transcribed and analysed using thematic analysis. Results: Four themes were identified: The Nature of Remote Interactions; Challenges Exacerbated by Being Remote; Expectation versus Reality; and Optimising for the Future. Remote consultations were considered to be ‘transactional’ and less personal, with difficulties building rapport, and different in role to in-person consultations. The loss of non-verbal communication and ability of Healthcare Professionals to ‘sense’ led to remote consultations being perceived as riskier by all groups. Issues arising from communication and cognitive impairment, balancing of the person with Parkinson’s and caregiver voice, and discussions of the future, affect this population specifically. Remote consultations were reported to have been more successful than anticipated in all three groups. Obstacles were not always as expected, for example age was less of a barrier than predicted. Video consultations were perceived as being preferable to telephone consultations by most participants, but not accessible to all people with Parkinson’s. With widespread expectation of ongoing remote consultations, potential improvements for these three groups and healthcare services were identified, including practice, preparation, increased awareness of issues, expectation management by Healthcare Professionals, and more time and flexibility for consultations. Conclusion: Advantages and challenges of remote consultations for this population are identified. Consultations could be improved with increased support, practice, preparation, awareness of issues, and more time and flexibility within services

Delivering Optimal Care to People with Cognitive Impairment in Parkinson’s Disease: A Qualitative Study of Patient, Caregiver, and Professional Perspectives

Background: Cognitive impairment is common in Parkinson’s disease (PD) and associated with lower quality of life. Cognitive impairment in PD manifests differently to other dementia pathologies. Provision of optimal care requires knowledge about the support needs of this population. // Methods: Eleven people with PD and cognitive impairment (PwP), 10 family caregivers, and 27 healthcare professionals were purposively sampled from across the United Kingdom. Semistructured interviews were conducted in 2019–2021, audio-recorded, transcribed, and analysed using reflexive thematic analysis. // Results: Cognitive impairment in PD conveyed increased complexity for clinical management and healthcare interactions, the latter driven by multifactorial communication difficulties. Techniques that helped included slow, simple, and single messages, avoiding topic switching. Information and emotional support needs were often unmet, particularly for caregivers. Diagnostic pathways were inconsistent and awareness of cognitive impairment in PD was poor, both contributing to underdiagnosis. Many felt that PwP and cognitive impairment fell through service gaps, resulting from disjointed, nonspecific, and underresourced services. Personalised care was advocated through tailoring to individual needs of PwP and caregivers facilitated by flexibility, time and continuity within services, and supporting self-management. // Conclusions: This study highlights unmet need for people with this complex condition. Clinicians should adapt their approach and communication techniques for this population and provide tailored information and support to both PwP and caregivers. Services need to be more streamlined and collaborative, providing more time and flexibility. There is a need for wider awareness and deeper understanding of this condition and its differences from other types of dementia

Making diabetes education interactive : tangible educational toys for children with type-1 diabetes

Younger children (under 9 years) with type-1 diabetes are often very passive in the management of their condition and can face difficulties in accessing and understanding basic diabetes related information. This can make transitioning to self-management in later years very challenging. Previous research has mostly focused on educational interventions for older children. To create an educational tool which can support the diabetes educational process of younger children, we conducted a multiphase and multi-stakeholder user-centred design process. The result is an interactive tool that illustrates diabetes concepts in an age-appropriate way with the use of tangible toys. The tool was evaluated inside a paediatric diabetes clinic with clinicians, children and parents and was found to be engaging, acceptable and effective. In addition to providing implications for the design and adoption of educational tools for children in a clinical setting, we discuss the challenges for conducting user-centred design in such a setting

Exploring the experiences of people and family carers from under-represented groups in self-managing Parkinson’s disease and their use of digital health to do this

Introduction: Digital health is thought to enable people to better manage chronic conditions, such as Parkinson's. However, little is known about how people from under-represented groups with chronic conditions use digital health to self-manage. Objective: The objective of our study was to explore the experiences of people and family carers from under-represented groups in self-managing Parkinson's, including their use of digital health to do this. Methods: Semi-structured interviews (n = 18, including four dyadic) were conducted remotely, with 16 people with Parkinson's and six family carers in 2020–2021. Participants were purposively sampled from under-represented groups: belong to an ethnic minority, or having significant physical or sensory impairment. Interviews were audio-recorded, transcribed and analysed using thematic analysis. Results: Three main themes of importance were developed: ‘self-management support’, ‘digital health use to support self-management’ and ‘identity, attitudes and characteristics’. Participants received medical, psychological, social and practical self-management support. Some participants used digital health resources, e.g., Parkinson's UK website. Digital literacy was the biggest barrier to using digital health, regardless of background, often dependant on previous occupation and confidence. Few ethnic minority participants thought race or culture alters self-management ability and most believed there was no need for digital health interventions to be tailored to an individual's race or culture. Some felt inclusivity was important in terms of diverse images of people. A range of considerations were identified to optimise digital health, such as assistive equipment for people with sensory impairment. Conclusions: Barriers to using digital health for self-management were primarily dependent on personal factors including digital literacy and attitudes but rarely race or culture. We recommend the optimisation of digital health interventions by providing assistive technology at low cost, and visual inclusiveness should be promoted by including images of people from diverse backgrounds

Transitions and challenges for people with Parkinson’s and their family members: A qualitative study

OBJECTIVE: To explore the experiences and challenges of people with Parkinson’s and their family members living in the community through the lens of their transitions to better understand the phases and changes in their lives. DESIGN: Qualitative study using semi-structured interviews and analysed using codebook thematic analysis. SETTING/PARTICIPANTS: Purposive sampling was used in primary and secondary healthcare services across Southern England in 2019 to recruit 21 people with Parkinson’s (aged between 45–89 years) and 17 family members (13 spouses and 4 adult children, aged between 26–79 years). RESULTS: Participants’ descriptions were classified in three main phases of transition from a place of health towards greater dependency on others: 1) ‘Being told you are a person with Parkinson’s’ (early), 2) ‘Living with Parkinson’s’ (mid), and 3) ‘Increasing dependency’ (decline). Seven sub-themes were identified to describe the transitions within these three phases: phase 1: receiving and accepting a diagnosis; navigating reactions; phase 2: changing social interactions and maintaining sense of self; information: wanting to know but not wanting to know; finding a place within the healthcare system; and 3: changes in roles and relationships; and increasingly dependent. CONCLUSION: This study has identified points of change and means of supporting key transitions such as diagnosis, changes in social connections, and increased use of secondary healthcare services so that comprehensive, holistic, individualised and well-timed support can be put in place to maintain well-being

Listening to the parent voice to inform person-centred neonatal care.

Family integrated care (FIC), where parents are an integral part of their baby’s care and decision-making can enhance parental involvement and empowerment, contributing to decreased parental separation and stress. It follows that parents can also be a central part of neonatal education for staff in the neonatal speciality. This paper focuses on what students and staff can learn from parents about what they feel is important to make their experience better. A narrative, interpretive approach was undertaken to collect and analyse parent interview narratives. A specific question was posed to a purposive sample of parents who have had premature babies about what health professionals can learn from them. Thematic analysis revealed five key themes relating to the importance of: communicating; listening; empathising; acknowledging (the parent’s role); realising (what matters to parents). These elements were incorporated into a framework named by the mnemonic, ‘CLEAR’. This highlights what parents want staff to be cognisant of when caring for them and their babies. Learning from the parents in our care enables a greater understanding of their experiences at difficult and challenging times. Having a deeper understanding of parents’ experiences can contribute to enhanced empathic learning.Peer reviewedFinal Accepted Versio